August 24, 2009

I am an autism parent with an MS is Clinical Counseling from Johns Hopkins University and a contributor to Age of Autism. I maintain my own blog at Adventures in Autism.

I saw Lori's piece today and would like to point out a few things that seem incredibly obvious from where I am sitting, but you genuinely don't seem to have on your radar (from what I could tell from the article), in regards to why America is not embracing "science" as you think they should. I hope you will be open to hearing from me for a moment, because there is a problem, but the problem may not be the public.

I feel like you may have confused actual hard "Science" with "things that most scientists think", as there seems to be a denial of the fact that scientific consensus has quite often been, and most assuredly still is in many places, wrong.

Chris and Sheril wrote: "...today this country is also home to a populace that, to an alarming extent, ignores scientific advances or outright rejects scientific principles."

I would put it to you that it may not be the "scientific principles" that are being rejected, but the principles of the scientists.

When my son regressed into autism following his 18 month shots and I spent a year trying to reconcile all of the contradictory positions of my own pediatrician, the AAP, the CDC, HHS, the "science" you say exonerates vaccines from autism causation, the whole of the research out there and the facts of my own son's case. What I found was a ridiculous mess.

What you keep referring to as "science" is making contradictory statements all over the place. It resembles nothing like the thing that "Science" is actually supposed to be, the methodical study of phenomena to figure out what is ACTUALLY, TRULY happening.

Yet the statements that scientists make claim that all the vaccine/autism questions have been answered, purport that all the possibilities have been explored and suggest that people should just kill what intellectual curiosity and concern for child safety that they have left and move on? How is that "Science"? How is that not laughable?

Case in point from Lori's article: "science has come in and we can't detect the correlation between a rise in autism diagnoses and use of childhood vaccines. And study after study has been done."

Yet "science" has never done a simple study that took a large group of vaccinated children and a large group of children whose parents chose not to vaccinate them, and compared them for autism incidence! Yet you suggest that it is time to let the vaccine/autism question go? The FIRST study that "science" should have done, still has never been done! And it may take an act of congress to actually make "science" do something it apparently really does not want to do. And that is only the beginning of the studies that have not been done.

Not to mention the fact that "study after study" is picked apart by other researchers, and even by lay parents, but those critiques are ignored by people like you who don't want to follow the actual scientific method. This same bizarre conversation is carried out over and over:

Mainstream science: "Here is a study... look no vaccine/autism connection".

Mainstream science (now with their back to the autism community and facing the microphones): "Awww.... poor desperate, scientifically illiterate parents looking for someone to blame. At some point they really have to let go."

There are about a thousand questions on the vaccine/autism connection that neither scientists nor research has ever addressed, and the medical establishment won't even allow to be asked in their "pulpits" because "science" is the new religion and their dogma cannot be questioned. Scientists are the priests, and those who diverge from the canon are branded heretics. Vaccines are inherently "good" and cannot be "bad". The research that points to vaccines causing autism is treated like the evidence that priests were molesting young boys... ignored, buried and those who dared call attention to it are bullied into silence. And yet you have a problem with the suppression of discussion of evolution in churches? Again.... from where I sit, the hypocrisy of your statements are stunning.

The scientific community overstates the benefits of vaccination and understates the risks. And of course they do, vaccination is their baby. Yet they don't seem to have the insight to understand that there is a conflict of interest there. Last year the AAP sent a representative to a Defeat Autism Now! conference to evaluate the state of their science into autism/vaccine causation. They sent Louis Cooper of the Sabin Vaccine Institute, one of the inventors of the Rubella vaccine. Seriously? Lou Cooper is the objective guy that is going to return to the AAP and declare, "You know what guys... I think the vaccine I invented and that is my greatest accomplishment in life may be playing a role in an epidemic of lifelong and deadly neurological disorders that are striking around 1 in 100 kids! I think we may have caused an epidemic!"????

I don't think that you have fully grasped what has happened in the vaccine/autism wars. A very large group of parents, physicians and researchers have made the accusation that mainstream medicine, the scientific community and public health authorities have created one of the largest iatrogenic epidemics of all time via an overzealous and under researched vaccine program. A very serious charge. Your community has responded to that charge by doing a minimal amount of shoddy research, in most cases paid for and carried out by the pharmaceutical companies that made the products in question and the agencies that made the policies that put these products into almost every tiny body in this country regardless of their risk factors, while simultaneously mocking those making the charge.

You have declared that YOU HAVE INVESTIGATED YOURSELVES AND FOUND THAT YOU ARE NOT GUILTY ON ALL CHARGES! And the policy makers among you have made sure that no appeal can be filed in an actual court where your accusers can bring evidence against you, compel you to testify under oath, or compel you to turn over internal documents, as you have passed legislation exempting yourselves from any liability or litigation. You claim innocence and just tell us that we have to take your word for it, as if "smart" also mean "honest", "incorruptible", "omniscient" and "looking out for the best interests of the public and all individuals".

Why in the world do you think that your reputation should be on the rise?!

What is happening is denial on a scale far grander than what transpired during the initial Semmelweiss Reflex. You want the public to embrace science, even the science that they don't want to face? You go first!

I started to write more on all of the corruption that is going on in the medical and scientific industries, but who has that much time.

Yes... to solve the problem that you want solved, reportedly that you want mainstream American to embrace "science", "Scientists are going to have to have a culture change."

But the change you suggest is the wrong one. You don't need more scientists (or more nerds rapping about super colliders), you need the scientists you already have to have a come to Jesus moment. The scientific community needs to understand that their hubris, arrogance, devaluing of the individual, ethical problems, legal problems, widespread conflicts of interest and constant denials of any evidence that is inconvenient to the advancements of their "scientific" agenda is the problem, and has to come to an end.

The scientific community needs a big dose of humility, and needs to consider the fact that their critics and those ignoring them, might have a few good points.

They need to listen to, and be able to cogently address their critics, instead of marginalizing and maligning them. And if they don't have an answer, they have to offer informed consent to the public and admit that they don't have an answer.

People see right through condescending BS. People have a tendency to treat you with the same dismissal with which you have treated them. What you are seeing may not be a "deep-seated streak of anti-intellectualism" but a deep-seated distrust of self-proclaimed "intellectuals" who openly disdain the unwashed masses, then wonder why their scientific pronouncements hold no sway with them.

Take minute and go read any autism/vaccine post on Orac's blog, as he is the rock star of the "woo" bashing 'skeptics' in your universe. Now pretend that you are a parent who has learned that thimerosal at nanomolar amounts causes mitochondrial dysfunction so severe that it can cause the cell to self destruct, and that HHS has conceded that in the Poling case mito dysfunction + vaccination = autism symptoms. And pretend that one of your questions are that if vaccines are known to cause Guillian-Barre, an autoimmune disorder in which the immune system attacks the central nervous system, then why can't they cause autism, an autoimmune disorder in which the immune system attacks the central nervous system? And pretend that you want to understand that if one vaccine contains enough adjuvant to stimulate the immune system sufficiently to put it on a search and destroy mission for viruses, then why do docs give five shots at once and claim it couldn't possibly overstimulate the immune system in some into a search and destroy mission for its own tissues; and why can't it cause the autoimmune state and neuroinflammation found in autism? And then pretend that you are confused by the stance of "science" that a fetus contracting Rubella is a known cause of autism, but that that a one year old being given a live virus rubella vaccine couldn't possibly cause autism; while remembering that VICP has ruled that Baily Banks would not have had ASD if not for his MMR.

And then pretend that you spend untold hours on pubmed and in chat rooms and on HHS/CDC/AAP web sites and you can't find any cogent answers for the questions you have. And pretend that your own pediatrician just got annoyed with you for asking questions he couldn't answer and then just stopped returning your calls.

And then go read Orac again (or any 'skeptic' blog or even your own article in the LAT) and ask yourself... 'why would any thinking person want to listen to us when we can't answer their questions and instead treat them with contempt to cover the fact that we can't answer their questions'?

Your 'skeptic' community's message to the public and parents like me? "You are an idiot and we have nothing but contempt for you. Now think what we tell you to think and do what we want you to do, even if it doesn't make sense".

Treat your audience like crap, and they will leave. Claim to be a scientist and spout completely unscientific and illogical statements (mean ones at that), and no one will care what you say.

Chris, when your own suggestion on how to fix the problem that you have defined is to lean more about the people who are resisting your message, not so that you might learn from them as to where you might have gone off the tracks, not even so that you might enter into a mutually respectful relationship with them where you are on the same level (what with you being "super smart", "highly educated" and "doing great stuff" while they are way behind you on some imaginary starting point), but so that you might condescend to where they are in order to manipulate them into believing what you want them to believe... can you see that you can't even see what the real problem is?

It is clear from this article that those you target, you do not consider your equals.

"Smart" is not the only virtue, and it may not even one of the most important virtues. Look back at the people who have done the most damage to humanity through out history. You will be hard pressed to find a dummy among them.

And it looks like they might even do a real job of investigating it. We shall see.

From Thoughtful House:

Thoughtful House on NBC News
Story Scheduled to be Broadcast this Weekend

August 25, 2009

Dear Friends,

As some of you may have already heard, the NBC television network is producing a special on Thoughtful House and Dr. Andrew Wakefield. We are sending along this note to make you aware of the extent of coverage on various programs and the scheduled broadcast date. First, though, we thought it was important to help everyone understand our decision to cooperate with the reporter, Matt Lauer, and his producer, Ami Schmitz.

In our estimation, there has not yet been any fair coverage in the mainstream media of Dr. Wakefield or the work of Thoughtful House. While we have a large community of supporters that know Dr. Wakefield's credibility and the accomplishments of Thoughtful House and our excellent physicians and clinicians, including Dr. Bryan Jepson, Dr. Arthur Krigsman, and Kelly Barnhill, CN, CCN, many of us in the Autism Advocacy Community spend most of our time communicating with people in similar situations. Our challenge has always been to reach out to a greater population that might not know or understand what is happening with regard to the autism epidemic and the lack of government research into potential causes, which includes looking at vaccine safety. We thought that if we ever were able to communicate with a fair-minded journalist working at a media outlet with both credibility and reach then it was likely to be worth the risk trying to tell our story.

We have taken that chance with NBC. While we initially declined their invitation for a story, we were persuaded to move forward when Matt Lauer was proposed as the correspondent. His reputation for being objective and thorough prompted us to reconsider and ultimately to open our doors. In March, TV crews from The Today Show, Dateline, and NBC Nightly News began gathering material at Thoughtful House in Austin. This involved taping long interviews with Drs. Wakefield, Jepson, and Krigsman, some of our therapists, administrators, and, more importantly, a few of our families. The crews traveled to London to report on the Lancet controversy and interviewed many of the central figures relevant to that part of our story. They also taped interviews, presentations, and families in attendance at the Atlanta DAN conference. Dr. Wakefield was flown to New York by the network and received what he described as a "tough but fair" interview in a one-on-one with Today Show host Matt Lauer. The person we have dealt with throughout the course of this project is Mr. Lauer's producer, Ami Schmitz. Ami has a long resume as a medical journalist and was formerly Dr. Timothy Johnson's producer at ABC News. In our assessment, she has been thorough and diligent in gathering information, documents, and asking the kind of detailed questions that have been glossed over or conflated in previous reporting. We believe, based upon hours and hours of working with Ami, she is writing an even-handed report, which will be narrated and hosted by Mr. Lauer.

Nothing is certain, of course, so we are taking a risk. However, we believe the potential reward is worth that risk; it's entirely possible this will be the first time this subject matter (autism, Wakefield, Thoughtful House, vaccine safety research) has been considered objectively in mainstream media. If that is the case, we have the possibility of communicating with millions of people and that will be nothing but positive for those of us dealing with autism in our own families. We will find out this Friday, August 28. A portion of Mr. Lauer's interview with Dr. Wakefield will be broadcast in an 8-10 minute segment on The Today Show. Either Saturday or Sunday, the NBC Nightly News Weekend will also broadcast a lengthy piece on Thoughtful House and vaccine safety. Coverage will culminate on Sunday night, August 30, at 7 pm EST, with an hour-long broadcast hosted by Mr. Lauer on Dateline NBC. This is scheduled to be adjacent to the Sunday night NFL football game on NBC, which means there is the potential for a large audience. In fact, the cumulative audience for all of these programs means there are likely to be no less than 5 million people who learn about autism and Thoughtful House and, quite possibly, as many as 20 million viewers will see the various broadcasts.

Consequently, you see the reason we decided to cooperate with NBC. The program might just be a game changer in the conversation we are all having in our communities with our governments, health care providers, insurance companies, and overall policies within our culture that marginalize families dealing with autism. We all started off several years ago on what many of us believe is the correct course for treatment and research and it has led us to this moment, and we believe we've made the right decision.

We would like to ask all of you that are active in the autism community to hold all judgment and wait to see the final broadcast. NBC has dedicated substantial time and resources to this story and the producer has made every effort to interview people from all points of view. Our hope is that a fair story will be told and you may submit feedback to the network after the shows have aired. Please do not attempt to contact them prior to the broadcast.

Please share this information with your friends, and if there are any last minutes changes, which we are told is always possible in the news business, you can rely on us to bring them to your attention.

Sincerely,

Anissa Ryland
Director of Operations
Thoughtful House Center for Children

August 21, 2009

PLEASE make sure you read the information below and the links in their entirity, and send your comments to the IACC. This panel is a useless disaster for our kids, and Thomas Insel has no bussiness running it.

Don't miss Yesterday's revelation that Insel's brother is a vaccine maker, or Insel's testimony last week before Senator Harkin that completely misrepresents the state of the science.

Take Action Today: The Interagency Autism Coordinating Committee (IACC) is requesting public comment on year two of the strategic plan for autism research and budget. The annually updated plan is the heart of the Combating Autism Act and was designed to improve transparency, accountability, and the expansion of research aimed at finding the cause (so that new cases could be prevented) and effective treatments for autism.

The most important areas for comment on questions 3 and 4 are that these areas are dramatically under-funded, especially on the question of environmental cause. Although there is a strong consensus in the scientific literature that autism is caused by environmental triggers in genetically susceptible individuals, most of the "cause" money is devote to searching for the elusive "autism gene" and not for the environmental triggers that might actually lead to prevention.

The two programs of vaccine research that were part of the approved draft plan last December must be restored. This is of the greatest urgency as these will examine the role vaccines play in the chronic diseases of childhood, especially autism, and lead to either focusing on other environmental triggers or changes in the schedule/screening in order to reduce vaccine-caused chronic illness. These two initiatives are:

1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000

2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

"Cause" research should also include the intensive real-time study of children as they first manifest symptoms of autism.

"Treatment" research should focus on behavioral and biomedical interventions actually in use throughout the community.

The web form surprisingly does not provide a specific place for comments on the introduction, mission, and vision statements, but crucial changes and upgrades are needed here. Although the present plan claims autism is a national health emergency, it must contain specific steps to address autism with the same urgency as, e.g., SARS, H1N1, Chinese toys, and E. Coli. At a minimum, the funding process must be revamped to move research quickly into the lab and out into the field. The budget must be increased substantially to reflect the astronomical cost to families and society and the benefits of preventing new cases and implementing treatments leading to practical recovery.

Further Background:
Listing of AoA Articles on IACC strategic plan
[http://www.ageofautism.com/2009/07/age-of-autism-on-the-interagency-autism-coordinating-committee.html#m
ore]
The "Not" Combating Autism Act in Action by Katie Wright, July 28.[http://www.ageofautism.com/2009/07/the-not-combating-autism-act-in-action.html#more]
A Mother Delivers When the IACC Fails.
[http://www.ageofautism.com/2009/07/a-mother-delivers-when-the-iacc-fails.html#more]

August 14, 2009

Are you just going to ignore the problem while paying lip service like President Bush did?

What will the autism rate be when Sasha and Malia are having children? Mr. President, you are a Star Trek nerd and your daughter has an autoimmune disorder. You should probably know that your own family is likely on the short list to join our not so exclusive club in the future.

If you would like to know what being the grand father of a child who has slipped into autism is like, I am sure I can arrange a meeting between you and my dad so you can decide if this is worth your attention now, or if you want to risk being just like us and saying, "If only I would have....", "If only I had known...".

"If only I had spent the billions from the non-epidemic of swine flu, on the real epidemic of autism when I had the chance, then maybe my grandson could look me in the eye and call me 'grandpa'."

As I previously mentioned, my dear husband has started a new company called Maine Bunk Beds. Non-Toxic, safer beds for kids. Yesterday we came up with a simple three step plan to become wealthy beyond our imaginations.

1. Get the government excluded Maine Bunk Beds from any product liability.

2. Get the government to not allow kids to attend school if they didn't buy the recommended number of Maine Bunk Beds.

3. Get the government to stage PR campaigns where mock riots were held with people resorting to violence if they couldn't get their hands on a Maine Bunk Bed.

August 11, 2009

...or if you are counting the kids who HAD autism but recovered, the rate is 1 in 63.

I am utterly speechless.

Because still... there is no sense of urgency... no rush to stop this. The entire country is practically shutting down over a mild flu, and yet brain damage to one percent of children garners still more yawns.

How many years have we been asking, "How high does the autism rate have to go?!"

Apparently higher than 1 percent of children.

Apparently higher than 2 percent of boys.

Will it be 1 in 50, is that the magic number that will finally wake up those in power?

Will it be 1 in 20? 1 in ten? 1 in two?

There should be rioting in the streets over this. Yet tomorrow will even one news network cover this?

UPDATE: Dr. Caroline Ward-Goldsmith left a comment that I should be read by everyone so I am adding it here:

I would like to comment and quote the exact figure which was officially given to me by the chair of the disabilities commission in brussels EU PARLIAMENT and it is

August 9, 2009

Molecular Biologist Becky McClain brought reports of dangerous working conditions and employee exposures to hazardous biologics to Pfizer management. She was told that the safety standards at Pfizer were based on what was legal, and since there was no legal oversight of the embryonic stem cell lab she worked in, those hazardous conditions were just how Pfizer did business. Then they began harassing her and told her to stop documenting accidents.

Then Becky got sick from a genetically engineered virus.

Listen to her story. If this is how little Pfizer care about their employees (who can sue them), imagine how much less they care about their customers (who can't).

August 4, 2009

Scott is launching a new company called Maine Bunk Beds. They will be a children's furniture company making solid wood beds, made from sustainable Maine wood, organic milk paint and zero VOC finishes. Eco friendly and safe for our chemically -sensitive kids.http://MaineBunkBeds.com

Right now he only had delivery for Northern New England, but if you are else where and are dying for a healthy bed for your child, I am sure he will try to figure something out.